Bibliosphere

 Exciting news posted by St Baldrick's: the long-term study for the biology- and response-based algorithm on the Children's Oncology Group study ANBL0531 for intermediate risk neuroblastoma is complete and the results have been officially published! In the long-term study, a ten year period, the overall survival rate was 95%, with an event-free survival rate of 82%, which is fantastic! Read the summary here .

 So I just went camping last weekend and I usually camp with my mom or alone. But this time I went with a friend. It wasn't perfect, but it was still nice to have gone. We made s'mores, enjoyed a traditional snack of beef jerky sticks and cheese, and made it through a 43 degree night. Yeah, in June. That's the mountains for you. But overall, I'm really glad that we went. 

 I have great news! February might be over, but you can still donate to my St Baldricks Fundraiser. In fact, you should definitely consider it, because they're upping the game, to 50 miles in June. I've gone back and done the math, and I have already walked over 30 miles! Perhaps this will inspire you to donate, or even start a fundraiser of your own! Click here to donate!

 I want a sign on my door at work that reads: "I'm trying my best, please be gentle with me." I want people to know that, even though my best no longer looks like it once did, it's still my best, and the best that I can do right now. Because I am suffering some of the worst symptoms of burnout I ever have. I am exhausted, emotionally and physically, and my executive function is trashed. I actually tossed out the idea of autistic burnout about a month ago, to my therapist. She said that it sounded plausible, or we agreed that it did. Autistic burnout is different though, from my burnout now, although honestly it's probably a combination at this point.  My brain does not work like other brains. All of my mental health conditions, my neurodiversity, make extra challenges in my work and life. The extra stress is extremely difficult, and I struggle with it on a daily basis. But it's invisible. I show up to work (most days) and I make an effort. I am accomplishing a...

 I love to do a little book report on what I've been reading. May and June were good months for audiobooks. I have taken a liking to listening to them not only while I walk, but also while I work, or in place of Netflix (which I do mostly just listen to). But here are my recent reads: The Lost Family by Libby Copeland - really interesting, had some points I hadn't considered An Abolitionist's Handbook: 12 Steps to Changing Yourself and the World by Patrisse Cullors (audiobook) Thanks a Thousand: A Gratitude Journey by A.J. Jacobs (audiobook) - this one was short, a little goofy, but a fun one 50 Ways to Rewire Your Anxious Brain: Simple Skills to Soothe Anxiety and Create New Neural Pathways to Calm by Maha Zayed Hoffman, Catherine M. Pittman (audiobook) I Am Malala by Christina Lamb, Malala Yousafzai (audiobook) - I actually did not know much about Malala's story, or about the situation in Pakistan, so it was interesting Moonshot: A NASA Astronaut's Guide to Achiev...

 The other day, we had a staff work day at the camp I used to work at. I love that camp so much. It was a lot of work, but we did a lot. I was actually a team lead for this, supervising five of my coworkers to clean the basement of our lodge. We worked slower than we really anticipated, but that area looked so good. I am always feeling anxious that I'm not doing a good job, that I'm being awkward, that everyone is annoyed/upset with me. It's something I've lived with pretty much forever. But, at the end of the day, the HR director asked me to come over and told me that I had been a great leader that day.

 I recently listed to a book of poetry as an audiobook, read by the author. It was one of my favorite authors, and one of my favorite poems was included.  Who made the world? Who made the swan, and the black bear? Who made the grasshopper? This grasshopper, I mean— the one who has flung herself out of the grass, the one who is eating sugar out of my hand, who is moving her jaws back and forth instead of up and down— who is gazing around with her enormous and complicated eyes. Now she lifts her pale forearms and thoroughly washes her face. Now she snaps her wings open, and floats away. I don't know exactly what a prayer is. I do know how to pay attention, how to fall down into the grass, how to kneel down in the grass, how to be idle and blessed, how to stroll through the fields, which is what I have been doing all day. Tell me, what else should I have done? Doesn't everything die at last, and too soon? Tell me, what is it you plan to do with your one wild and precious life? Ma...

 June is Cancer Survivor Month! We are so proud of all of our survivors, and are so glad that they get to grow older and have the experiences of adulthood. My brother is a 17 year survivor of rhabdomyosarcoma. My dad is actually also a cancer survivor of around 25 years, so we have two long term survivors in my immediate family. I am grateful that both of them have made it to this stage. This month, we honor the survivors as we keep all children fighting cancer in our thoughts, year round. Survivors represent 80% of childhood cancer patients overall, though as we know this is only the 5 year survival rate. Cancer survivors, especially childhood cancer survivors who receive harsh chemo and radiation during critical developmental periods, face unique challenges, physically, mentally, and socially. So this June, check in with the cancer survivors in your life.

 I moved to Utah for many reasons. One was the weather. While not perfect, in my 17 year old mind, the weather of Utah was far superior to the dreary and humid Wisconsin. Another was school. When I moved here, I was offered a scholarship I could not turn down. I also moved here because of the mountains. The mountains have always felt like home, from the time I was small and playing in the foothills of Northern Utah. The mountains are still home, and I took a moment to appreciate them at sunset the other day.  

May might be over, but brain tumors affect children and their families year round. Keep the 83 kids that will be diagnosed with a brain tumor in the US this week in your thoughts.